Roadtrips, Resus and Rollerbooting

The Hills

Here we are the day before Good Friday, the sun is shining through freezing temperatures, giving a warm glow for those on the way to work. Their footsteps, that much lighter knowing that they are on the countdown to an extra long weekend, courtesy of Easter.

The children’s tired crumpled faces that have appeared the past few weeks will soon be a thing of the past as the later mornings start to appear and the fresh air from parks and outdoor activities take effect.

I am in the office surrounded by chocolate Easter eggs. Staff are winning the biggest eggs and discussing which ones are best. It’s torture!!!! I am not allowed the wonderful, melt in your mouth, miracle that can take away all your problems away whilst the taste lasts. Still, at least my waistline won’t be screaming at me for neglect, though with all the other food dished up over this holiday I am sure it won’t be very happy.

So what have the “Hills” been up to the past weeks?

Mark and I entered on to our roadtrip up to Norwich to see the great “Oz”. The consultant isn’t actually called that but the build up was like we were going to see the most important person living. Which I suppose in my case he probably is.  

I love my roadtrips with Mark. It gives a few hours to chat, laugh and sit in silence without interruptions. Since the children came along days like this are few and far between. Norwich is an 8 hour round trip which so perfect for us to reconnect.

The appointment was long, which is better than last time when the great “Oz” was on holiday. We are now going over old ground with the threat of new diagnoses. Times like this can be frightening but to be honest I think Mark and I are to the point that nothing can shock us anymore. We sat there being told that I will be ill for a very long time and that it is going to be a long journey with smiles stuck to our faces, nodding our heads to show we understood and brows slightly askew, thinking of the next question of the back of the news we had digested. We are the epitome of the image of swans……appear in control and calm from the top but if you take the time to look underneath the water you will see our feet desperately paddling trying to keep us afloat.

The appointment has generated new tests and treatments which should start in the next fortnight. I won’t lie and say it will be pain free or plain sailing but we are used to bumpy waters and a few bits of discomfort lead will, hopefully, lead to a better quality of life which is the most important thing for all of us.

The children are well and looking forward to gorging themselves on the offerings they will get over the next few days. They are both growing up so quickly. Jacob is now taller than me and on his way to being a young man. He can make a challenging argument and is starting to negotiate to get his own way. Between his activities and seeing his friends, I hardly see him. He is amazing. I can hardly connect the screaming toddler who pushed my patience from the time he woke to the time I put back in his cot. Don’t get me wrong, he is still a challenge but with the normal teenage grunts, hair flicks and language I am still trying to understand. We are so similar, I often see Mark rolling his eyes when we argue trying to decipher who is the bigger child, me or Jake.

Boo is still “off of the wall” with her zany look on life and even zanier fashion sense. She has the ability to make us laugh without understanding how or why. Her resilience is astounding. She has witnessed things that even adults shouldn’t but bounces it off with humour and strength. Because she is too young to leave on her own she accompanies us to Resus. She sits on the side of my bed chatting with the nurses on doctors as though she works there. On a recent trip the HSO said Boo should become a doctor to which Boo replied quite adamantly that she was going to be a “Roller Booting Instructor” but would consider medicine if she could stay in her role boots. We said that her idea may speed up things. J

On a serious note things for the family have been extremely difficult the past couple of months. The rollercoaster effect has shown itself so we are due for a steep downward bank that will see us screaming with terror and delight at the same time, with our arms outstretched above our heads, feet losing gravity and smiles that will be captured on a camera or in our minds. I can’t wait…..life’s perfect moments for our memories scrap book.

When a serious illness appears a family can be torn apart through fear, worry and uncertainty about the future. Or they can pull together, discuss what has happened and face the future as a unit. Below is an article by Linda Kinyon who has the top ten tips on what to do if someone in the family has a chronic physical or mental health illness. Being the person effected I am not sure that I agree with all her points but we are all individuals who require differing approaches.

Ten Tips for Coping with a Family Illness

Life is going along smoothly when all of the sudden you hit a bump in the road. A loved one, spouse, child or other relative, has been diagnosed with a chronic illness. How do you cope? What do you do?

·         Educate yourself and your family about the recently diagnosed illness. This may include visits to the library, the doctors and hours on the Internet researching the chronic illness that your family member has just been diagnosed with. Don't be afraid to ask questions if you don't understand something!

·         Be a source of strength for the patient. Easier said than done I know. Save your tears for elsewhere and be brave here. The last thing your loved one wants or needs to see is your distress.

·         Be encouraging and allow them to grieve if need be. Assist them in getting pastoral help if desired and be available if the just want to talk about it.

·         Assist the doctors in your family medical history. Above all, be honest. Hiding that Aunt Elma had a specific disorder is not appropriate. It may be a key to unlocking the disease.

·         Take advantage of all support organizations for your loved ones medical condition. You may sign up with several only to find that one specific one gives your family the most emotional and/or educational support. Ask your hospital's Social Service's department for recommendations, look up the condition on the Internet and see if there are local groups dealing with the disease.

·         Don't neglect other family members, especially children. Children often blame themselves for the disorder, "If only I hadn't wished Aunt Elma would get sick because she scolded me...". Reassure them that it is not their fault, they had nothing to do with the condition. Get them involved in a support group as soon as possible and assist them as much as possible in dealing with their loved one's condition.

·         Share with your friends and when they ask how they can help, have a few ideas in mind to answer them. Don't be afraid to ask for meal assistance when in for treatment or just home from treatments. Don't be afraid to ask for assistance with housework or other chores or even childcare if needed.

·         Take time for yourself daily. Whether you go for a daily walk, to the gym or just a long soak in the tub with a good book. Take time out from your stress and give time to you! This is healthy and a very important coping mechanism.

·         Share with other patient's families in the waiting room. Chances are they are going through many of the same feelings that you are. You might make some great friends this way. At the very least you will certainly see that you are not alone, that other families are going through a very similar situation.

·         Be honest with your loved one without frightening them. Children often ask, "Am I going to die?" The truth is, everyone dies eventually and we do not know when each of us are going to die. Medical science is continuing to update procedures and medicines to cure diseases and conditions.

·         Enjoy the time you have with your loved one and cherish every moment. Embrace this chance to draw close to them and do not begrudge the time you spend with them whether it be sitting beside them in the hospital or the clinic or just keeping them company on a bad day.

So, what is coming up?

Apart from Easter I will be in hospital soon trying a new treatment. I am hoping to manage it around my home and work life. Timing will be tight but we should be able to do it. The difficulty will be trying to keep out of A&E and the treatment. I am due to undergo two, minor, surgical procedures but they are nothing but a little bump in the road.

The children can think of nothing apart from Easter eggs and holidays. They will be very miffed when told of their school homework. Unbelievably with all the snow around they will be going back to the summer term in two weeks. Both have exams so the house will start to look like a school room with revision and books everywhere.

Work is keeping me very busy with training and projects. I am so proud of what we have achieved and how it is already changing people’s lives. The feeling of doing something worthwhile helps you face the day to day challenges.

On the social side, I still have a couple of outfits that I need to introduce to the world. The “girls” have organised a couple of nights out so be prepared. I am looking forward to donning my high heels, dresses and dolling myself up. I will be prepared for stupid people with sharp retorts and a dashing smile….photos sure to follow.

Anyway, time to go and do some work.

Until next time my fellow lunatics.

Sarah X